Our story

My father died of Idiopathic Pulmonary Fibrosis in 2014, causing me to begin a search for answers into this devastating progressive lung disease. Within three years, my mother was also diagnosed with IPF and died only months later.

My curiosity was piqued and my quest to learn about the disease took on more urgency. I had been told by physicians that IPF is a rare genetic disease and that the odds of both spouses having IPF are infinitesimal—that my parents are statistical outliers. I discovered accumulating evidence indicating a strong association between bacteria, viruses and IPF.

As IPF was destroying my dad’s life, he struggled with the disappointment that no cure existed, and he looked for a way to support research that could lead to a cure. Having spent his entire career as a hospital CEO, he understood the importance of discoveries through clinical trials. It was frustrating to him that he was unable to find an avenue for the public to easily donate directly to much needed studies. The lack of outlets to support IPF research was the impetus for our foundation.

Jim & Carmen Knoble 2009

… the magnitude and impact on families grows exponentially when you multiply that by as many as 500,000 deaths every decade in the US alone. Yet I remain hopeful.

I am driven by a strong desire to save lives and am struck by the obvious need for more research funding. I don’t want anyone else to go through the profound loss our family has experienced. IPF has hit my family hard, but the magnitude and impact on families grows exponentially when you multiply that by as many as 500,000 deaths every decade in the US alone. Yet I remain hopeful.

Exciting new technological innovations are enabling the scientific community to make discoveries that were not possible until recently. We are at a pivotal point in better understanding the role of the lung microbiome in the development of IPF. Dr. Jerry Eu, former Program Director-Immunology/Fibrosis at the NIH, wrote, ” If micro-organisms are triggering and/or sustaining the disease and we are able to figure this out, then a cure should be in sight.”

Now more than ever, we have an incredible opportunity to make a difference by supporting much needed clinical research. But we can only accomplish this work together. Please partner with us to end IPF!

Many thanks,

Kristan Knoble RiceExecutive Director, IPF Foundation

Our mission

We advocate and fundraise for the most promising research to accelerate cures to end idiopathic pulmonary fibrosis.

Frequently Asked Questions about IPF Foundation

What is your goal?

The Idiopathic Pulmonary Fibrosis Foundation is a volunteer organization dedicated to saving lives through medical research and educating the public about the need for more research and clinical trials. We’re bringing much-needed funding to a disease that’s under-recognized and under-studied.

Why did you create the IPF Foundation?

As IPF was destroying my dad’s life, he struggled with the disappointment that no cure existed, and he looked for a way to support research that could lead to a cure. Having spent his entire career as a hospital CEO, he understood the importance of discoveries through clinical trials. It was frustrating to him that he was unable to find an avenue for the public to easily donate directly to much needed studies. The lack of outlets to support IPF research was the impetus for our foundation.

Why donate to the IPF Foundation?

We are here with a singular purpose – to support medical research to identify causes and cures to end pulmonary fibrosis.

What percentage of your donations go to IPF research?

100% of all online donations go directly to IPF research.

Do you collaborate with others?

Yes. Only by collaborating with all stakeholders will we be able to identify causes and discover cures for IPF.

How do you decide what research to support?

Most research on IPF has looked for a genetic cause, and relatively little research has been done on the topic of the microbiome or bacteria and viruses as significant risk factors for IPF. Accumulating evidence points to strong associations between bacteria and viruses and IPF. We believe answers and more questions will come from the big data trials. We will continue to identify the most promising research to accelerate pulmonary fibrosis cures. However, more research and funding is needed.

Is there a cure for IPF?

There is no cure for IPF. Unfortunately, 50% of people diagnosed with IPF die within 2 years, and 80% die within 5 years. In fact, while there are drugs that may prolong the disease or delay severity of symptoms, IPF remains a fatal disease. While that’s a depressing statistic, our foundation is focusing on what can be done to better understand the causes of the disease and find cures.

“If micro-organisms are triggering and/or sustaining the disease and we are able to figure this out, then a cure should be in sight.”

– Dr. Jerry Eu, Former Program Director, Immunology/Fibrosis at the NIH (2016)

Are there more cases of IPF than there used to be?

Yes. The incidence of idiopathic pulmonary fibrosis (IPF) doubled over the decade, according to the New England Journal of Medicine. Learn more.

When do we expect to hear back from the CDC?

Recently, the CDC identified a statistically significant cluster of IPF patients diagnosed at a Virginia medical center. We are monitoring the issue and will share updates here. Learn more.

How many people die each year from IPF?

An estimated 50,000 people die from IPF in the U.S. each year, more deaths than from breast cancer. (See source study.) This statistic does not include the high percentage of people who are never diagnosed. See graphic below. Experts agree that we don’t know the extent of deaths and that more research is needed.

Add your name to join the community working to end idiopathic pulmonary fibrosis.